Being autistic in a world not made for me

Meltdowns

I’ve had them most of my life. They were at their worst during puberty but they never went away.

My meltdowns can be violent explosions of rage caused by stress, sensory overload, change or something I can’t deal with. I’d describe a meltdown as a mixture of fight, flight and freeze all at once. I feel angry, afraid, want to run, want to lash out, a huge melting pot of conflicting emotions. Although they may appear it, autistic meltdowns are not an anger-management problem – they are an overload problem.

Over the years, my meltdowns have lead to damaged possessions, a damaged head (due to my tendency to hit myself round the head during a meltdown) and damaged relationships.

At the very extreme, the worst ones have seen me at risk of trouble with the police, at risk of emergency psychiatric intervention or have caused other people to be at risk (when I threw something through a window). Although the vast majority are not that bad, they are still unpleasant.

I would do anything to stop having meltdowns. Preferably before I damage another laptop.

Most of these don’t help. Some things work a bit. If I don’t drink, exercise regularly and eat healthily, making sure I don’t let my blood sugar crash, I can reduce the risk of meltdowns. But I’ve never been able to stop them particularly at times of change or stress.

It turned out I was looking in the wrong place for answers. Without a diagnosis, I was doing what might help an neurotypical with an anger-management problem. I needed to do what would help an autistic with a meltdown problem.

I found the answer unexpectedly.

A few weeks ago. I had a meltdown. I was going away the next day. I usually have a lot of stress and at least one meltdown before I travel. This meltdown was getting nasty. I was a maelstrom of anger, frustration and fear. All logic had escaped me – I had hit myself and dumped the neatly-packed contents of my suitcase in a heap on the floor thus increasing my stress even more.

Then, mid-meltdown, I threw myself into a chair and started to rock. I don’t know why I did this, it’s not what I usually do. But I noticed a feeling of calm and, although I still felt shaky, I was able to think rationally, repack my suitcase and finish my preparations.

The next week I was at a conference, another hotspot for meltdowns. I had already had one minor meltdown but the chaotic feelings I experience prior to a meltdown were bubbling up in me again. I felt stressed, angry and panicky, couldn’t concentrate very well and my thinking was becoming irrational.

The last time I’d been at this particular conference three years ago, I’d had a nasty and very public meltdown. I didn’t want a repeat performance so I took myself away and sat on my own in a hotel room.

Normally I would have just hoped that being alone away from the trigger would make it go away. This is an ineffective strategy once my thoughts have become jumbled and the meltdown has begun to build, and could have lead to a wrecked hotel room.

Instead, I shut my eyes and rocked.

After about 15 minutes, I was dizzy, the room was spinning, but an amazing thing had happened. I was not on the edge of a meltdown any more. I could think clearly, I felt in control, like I’d come back to myself and even better, I had the peaceful feeling I sometimes get after a meltdown without having to go through the meltdown. I have never had this happen before.

I went back to the conference feeling calm. I rejoined my discussion group and was even able to participate without getting upset.

Rocking had actually stopped a meltdown. It blew my mind.

I expect there are people out there that had this figured out by the age of 11. I am middle-aged. But it’s incredible to me to find something that actually stops meltdowns. And what’s more it’s autistic behaviour.

Too often autistic behaviours are seen as problematic and bad. People who rock are seen as weird. Perhaps it was one of the things I was told not to do as a child. What if my parents had instead told me at the age of 13 to go and rock for half an hour when I was having a meltdown. How different would my life and my family’s life have been?

Now post diagnosis, in my 40s, I don’t care if people think it’s weird. I’m autistic and this is an autistic solution.

I’m not it’s solved the problem completely and I will never have another meltdown again. There’s a chance that if I leave it too late and the meltdown takes hold, I won’t remember to rock. Also over Easter I diverted a meltdown by rocking but it morphed into a shutdown where I was unable to function for a couple of days.

However, it’s still amazing for me to have found something that actually helps. I now rock regularly to keep myself calm, because it feels good and as a preventative measure. If I do have a meltdown, I won’t beat myself up for it, but when I can, I will rock and calm myself down.

I wonder what other autistic behaviours I can use to solve life’s problems? Certainly routine is a big one that helps me a lot. What helps you?